How To Manage Your Medical Information As a Chronic Illness Patient

This is a sponsored post, but all opinions are my own. I do not accept partnerships that I do not believe in! Thank you for supporting Kate the (Almost) Great.

A little-known part of living with chronic illness is how many appointments and how much information we deal with. I already knew that, but it was super reinforced when my rheumatologist went to private practice outside of Massachusetts General Hospital, or MGH. When he was at MGH, he could easily see all of my blood work results ordered by my other doctors, all of my testing results, and even all of the notes from my other MGH doctors. I had no idea how good I had it when all of my doctors were at MGH! In this post, I’m going to take everything that was reinforced for me within the last year to help other patients deal with a very common problem. Let’s talk about how to manage all of your medical information as a chronic illness patient, and not just for the benefit of your other medical providers. The tips I’m sharing will help you be a more prepared patient, which will help you tackle medical problems in the future. Knowledge is power!

When you're a chronic illness patient, you can have a lot of medical appointments. It can get really confusing really fast! In this blog post, long-time chronic illness patient and blogger Kate the (Almost) Great shares her tips on how to manage your medical information as a chronic illness patient. Plus, she shares an app that makes remember what her doctors say in her appointments a lot easier!

How To Manage Your Medical Information as a Chronic Illness Patient

Keep a simple document with key information – I started doing this in 2011 after I had been diagnosed with RA and was struggling with remembering (and including) all of the information I needed to include when I went to the doctor. When you go to an appointment, they frequently have you fill out a sheet with relevant information, but it doesn’t have much space on it! For example, before I had been diagnosed with RA, I had already had 4 foot/ankle surgeries, but the sheet at the doctor only had 3 lines. And then when you take into consideration medications, if you take more than 3 medications, it can be difficult to remember the exact dosages of them. It’s also important to share allll of your medical history with the providers you see and not just what you’re seeing that doctor for. You might not know if one chronic illness could influence a different part of your health or vice versa.

Additionally, you need to know your family’s health history. For example, my aunt and cousin both have other autoimmune diseases. My cousin was diagnosed a few years ago, and his doctors needed to know that I and our aunt both have autoimmune diseases. We all have different ones, but that family history made sure that his doctor considered him having an autoimmune disease. You might not know that a family history of x condition could cause the same or different condition in you. It is so much simpler to have all of this information in one document, which is my #1 thing that I always have. I have a copy of it folded in my wallet, and I print out new copies to give to my medical team and I usually send a copy to my parents. God forbid anything happen that would make it difficult or impossible for me to talk with doctors about my medical history, but if it did, my parents would then have a copy of that sheet. I strongly suggest sharing yours with whoever your emergency contact is, whether it be a relative or a partner. Get the template of the one I keep here.

Talk to your medical providers about signing HIPAA disclosures – Like I mentioned at the beginning of this post, while I first starting seeing my rheumatologist when he was at MGH, he isn’t a doctor there anymore. In fact, he’s a doctor in a different city at a different medical network. (For example, Brigham & Women’s Hospital is part of Partners Healthcare, just like MGH is, but my rheum’s network is a different one.) If I want my doctors at different networks to talk directly to each other, I need to sign disclosure forms. HIPAA is the Health Insurance Portability and Accountability Act, which requires the protection and confidential handling of protected health information. To be on the safe side, offices and networks regularly require patients to be explicit in who they can talk to about what. When I was hospitalized in The Fiasco, my doctors wouldn’t have been allowed to talk to my parents about my health if I hadn’t signed a form earlier in the year allowing it. I have to sign that form every year. (I don’t know if that’s MGH protocol or HIPAA protocol.) So if your medical providers are at different facilities or in different networks and you want them to talk to each other, or you have family or a partner deeply involved in your care, make sure you sign those forms.

Download files from key appointments – Everything is electronic these days! Going back to the examples of my rheumatologist and The Fiasco: he wasn’t actually my rheumatologist when The Fiasco happened because he had left MGH and the Boston area, and I figured it was at least worth trying a rheumatologist at MGH. Well, that went badly, and I became his patient again … which meant that I had to catch him up on everything that had happened in my illness. I downloaded files from MGH’s online portal, including the notes written by the surgeons who operated on me, and put them on a flash drive to give to him (it was over 200 pages). I last saw him a few weeks ago, and before that visit, I printed off all of the reports from the blood work I’ve had done since I last saw him. But I also saved a copy of those reports for myself. Technology is great, but it can also fail, so having your own copies of results and notes is super helpful.

Chronic illness advice: resources for the newly-diagnosed patient

Store those files in an organized way – What’s the point in keeping your files and records if you can’t easily access them? It’s definitely a good idea to have a folder on your computer for these things, and also make sure that you have antivirus software. You don’t want to have personal files with your private medical information on your computer just to have someone hack your computer and get all of that! So make sure that you and your computer are protected. That being said, try to organize your files the best you can. A good trick is to name your files based on how you’re most likely to search for them. That’s going to depend a lot on you, your health, and what your medical team looks like. Again, my rheumatologist is the only major member of my medical team outside of MGH, so most of my files are named things like “Rheumatology March 2020” so I can easily find them and print them off. If you’re a paper organizer person, it’s a good idea to have a binder or something similar to organize your files.

Managing your medical information as a chronic illness patient Click To Tweet

Bring someone with you to key appointments – It is so, SO helpful to have someone else with you at important appointments. If you get really bad or really good news, you might not retain other information from that appointment. Trust me on this – I’ve gotten both multiple times and every occasion I haven’t paid a lot of attention after getting that news. Having one of my parents with me at appointments when I expect to get bad or good news has majorly helped with that. Every time, they have picked up on information (or changes in the doctor’s tone) that I missed. Additionally, they are so helpful even without news of any kind because they can include their observations of my health and, of course, they have questions that I don’t think of asking.

Chronic illness advice: what to do if a doctor isn’t listening to you

Keep track of what happens in your appointments – This is going to look different for different people and how they process information. I personally take notes throughout my appointments. When I was hospitalized for The Fiasco, I took notes on my phone because I couldn’t take them on pen and paper. But to the other people in the room, including my doctors, this looked like I wasn’t paying attention to the appointment. That’s why, if I’m able to, I write notes on paper, usually in my planner so that I can easily access my notes from other appointments. It’s also helpful so that I can debrief my family on the appointments. Another way to do it is to record your appointments. And one app that can help you do that is Abridge.

What Is Abridge?

Abridge is an app that enables you to safely record and store your medical conversations. Then, it creates an abridged transcript of your conversation so you can easily review it later without needing to replay the recording. You can replay it, but you have the option not to. You can also share that recording and/or transcript via email! This is helpful for you to make sure that you don’t miss any important or clarifying information if you get distracted in your appointment. Or just because you didn’t think about it in the moment!

It’s also helpful if your family or your partner is involved in your medical treatment. That way, they don’t have to come to every appointment to get every piece of information that you get from the doctor. Medical appointments take up a lot of time, and when you’re accommodating two people’s schedules, it’s hard to find a time that works. Not to mention, with the world-wide pandemic we’re currently in, the people normally involved in your medical treatment might not be able to come with you to your appointments.

To go back to my Fiasco example: Over the course of the 6 months after The Fiasco – from being discharged to things going back to normal – my parents went from going to most of my appointments to only some of them to none of them. That’s because I’m an adult and they want to make sure I have my independence and I don’t need them to come with me to normal appointments, but they’re my caregivers and in the critical healing-but-post-admission time period, they needed to be at most of my appointments. In the transition period of getting back to normal, it was hard to work around their schedules, as they’re both busy people with jobs and lives. If I had Abridge then, I would have used the app to record those appointments so I could have easily played it back for them or emailed them the transcription.

This is a screenshot from the app. Towards the top-middle is a large hot pick circle with the drawing of a white mic in the middle. This is the "record" button. There is a blue banner that says "Stay informed on COVID-19. Tap to learn more" because this screenshot was taken in March 2020. Below that is a demo trascript/recording. It's titled "Mar. 21 [DEMO] Fastest diagnosis ever!". There are key words from that demo highlighted as tags below. One is "kidney stone," one is "CT Scan," and the other is "ibuprofen." There is a blue banner with an arrow pointing to this demo. It says, "Curious about how Abridge works? Check out our demo to see how Abridge can help you keep track of your health conversation."

How does Abridge work? It’s super simple to use. When you open the map, in the top-middle of the screen is a large hot pink circle with a microphone image in the middle. Click that and it starts recording! You can pause the recording at any time and easily restart it again. When you’re done, click the button that reads “I’m All Done”. The next screen asks you to add some details. The only required detail is your name, but you can add who else is in the recording, all for your own uses. So you don’t need someone else to be an Abridge user to “tag” them because it’s not tagging like used on other apps that will alert someone else with an Abridge account that you’ve tagged them. For example, if it was a rheumatology appointment, I would select the name of my rheumatologist, but I could also just name him “rheumatology” in my account. You can also name the recording if you want to; in the same rheumatology example, I would name it “Rheumatology March 24, 2020” for easy access in the future. If you decide not to create and use tags, you can include the doctor’s name from the appointment in the optional “Who did you speak with today?” label.

Finally, you click “done” and the app will see if you want it to create an abbreviated transcription for you. It’s abbreviated (or, well, abridged) to save space by skipping over things that aren’t crucial for remembering going forward. The AI scans for medical terms and such to create transcripts around. The things it will scan for include the names of medications, discussion of imaging like MRIs, possible diagnoses, and more. This is all done with AI, and not by humans, which is a good thing because then other humans aren’t going through your private medical information. (I’ll get to privacy later.) It’s important to note that while only areas around medical mentions will be transcribed, the whole recording will still be available to you. So should the AI miss something, you’ll still be able to listen to the whole appointment.

This is a screenshot of the Abridge app. It features the transcript sections from the demo of the app's recording. Medical words like "kidneys" and "CT scan" are bolded. Some of the sections have stars next to them to indicate that they are important or the user wants to go back to them later.

Additionally, the app has a really awesome demo feature to show you how to do all of this. It’s a pretty simple process all things considered – there aren’t unnecessarily frills in the app – but I strongly recommend doing the short demo before you get to your appointment that you want to use the app in.

Once you’ve done all of that, you can send the information via email. You don’t have to send it – it will be stored within the app – and you can also send it later. It’s not like your only option to send it is right after the recording happens. Overall, it’s really easy to use.

This is a screenshot of the Abridge app. It has the screen described in the previous image (of the app's demo recorded transcript) but there is a white pop-up. It's titled, "You haven't shared with anybody yet! People you frequently share with will appear here." There is the option to select an email address from your contacts, and there is a space for you to add a message. There is also a button that says, "Send."
All about the Abridge app, which helps patients record and transcribe their medical appointments. Click To Tweet

Answering Questions about Abridge

Do I need permission to record my appointment? Ethically, it’s always a good idea to ask people if they’re okay with recording your discussion with them, but that’s especially true when it comes to recording professionals who you have a relationship with. (If you already have a rocky relationship with a provider, it’s not going to get better by you recording them without their knowledge. And if you have a good relationship with that provider, it could turn rocky if you record them without their knowledge.) But legally, there are some states where you need other people’s permission to record them, which includes my state of Massachusetts. If you go to a doctor out of the state that you live, make sure to check if it’s allowed in that state, as the law applies to the location that the recording is taken in. So if you come to Boston for one of the many hospitals here – even if you don’t live in Massachusetts – you are legally required to get your provider’s permission to record.

How does this work if you’re doing a virtual appointment and you’re in one state while your doctor is in another? I’m not a legal excerpt, but again, the ethical thing to do is to ask if you can record.

Wondering how HIPAA comes into all of this? It doesn’t! HIPAA was created to protect patients from doctors, hospitals, insurance companies, etc. sharing their private medical information. But patients have always been allowed to share their own medical information. I mean, would this blog exist if I couldn’t share my experiences? Basically, HIPAA doesn’t apply to Abridge because Abridge was built for patients. Some of Abridge’s co-founders are former doctors, but it’s for patient information.

How do I know my information is safe? First of all, as I mentioned earlier, the benefit of the transcriptions being written by AI is that no one on the Abridge team is going through your recordings to transcribe them for you. Plus, Abridge uses industry-leading data security policies to keep your info safe. The people at Abridge can’t even see your information until you expressly grant the permission. And even if you do that, everyone on the team has taken a version of the Hippocratic oath, aka to do no harm. The goal is to empower patients.

Finally, if you take a test recording of your own which you want to delete later or you want to delete the recording and transcript of an appointment with sensitive information, you can. As the screenshot below says, “If you erase this recording, it will no longer appear in your track record, and all data associated with the recording will be removed from our system. You cannot undo this action.”

This is a screenshot of the Abridge app. The top of the page says, "really erase this recording?" Then there is a picture of the date and title of a recording. The date is "Mar. 21" and the title is "Recording on Mar. 21" Then there is text that says, "If you erase this recording, it will no longer appear in your track record, and all data associated with the recording will be removed from our system. You cannot undo this action." Then there are two buttons. The first says, "Erase My Recording," and the second says, "Cancel."

Kate, do you trust Abridge? Yes, without a doubt. I have tried the app. I’ve talked to one of the founders (a doctor who has been on both sides of the doctor-patient relationship) about his story and why he helped create Abridge. I think that Abridge is an incredibly helpful tool that will help patients understand their appointments better and help them make informed decisions about their health.

You can find Abridge on Google Play or the App Store.

How Do You Manage Your Medical Information?

Like this post? Check out:

Chronic Illness and Mental Health, How To Become an Advocate for Patients, Hacks for Living with Chronic Conditions, A Guide to Chronic Illness for Those Who Don’t Have One

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